I remember the nausea I felt arriving at my first CdLS conference four years ago outside Chicago. Hope was about seven months old and at the time, Joel and I had never met another child or adult with CdLS (other than Will).
My mind raced with possibilities, fears, and worries. Where would Hope fit in the vast variability of CdLS? On the more severe side? More mild? How did the syndrome manifest itself? What was life like for each family? Hope really wasn't doing that much and I was getting eaten up by a bad case of the "what-ifs" and fear of the unknown. I was terrified.
In the end, it was such a good experience. The families we met were so welcoming. We learned a ton about CdLS and it felt great to meet a group of people and never have to explain why my seven-month-old was the size of a newborn. No explanations were necessary.
Fast forward four years and we just got back from our second CdLS conference last month, again in Chicago. I wasn't nearly as nervous as I was the first time but it was still a bit nerve-wracking. But again, we got so much out of it.
We met with specialists who actually know a lot about CdLS and are very familiar with it. We met a ton of wonderful families who again were so welcoming. And we again got to see where Hope fits in the mix. We've always known that Hope is not mildly affected; we still feel like she's more on the moderate to severe end of the spectrum.
Still, I left the conference feeling optimistic -- optimistic about Hope's future, about learning to communicate with her, and figuring out this difficult thing called CdLS and all the challenges and hurdles it throws our way.
I also left ready to work on maximizing Hope's potential. We met a speech therapist, Majorie Goodban, at the conference who has been working with CdLS kids and adults for nearly 30 years. During a consult with Hope, she told us that she believes Hope will speak one day, though possibly not until 10, even 11. She has met kids who have talked that late.
I could've bawled right then and there. Speech is kind of like potty training in my mind -- something we aspire to and hope for Hope, but aren't definitively planning on. But it felt so incredibly good to hear someone so familiar with CdLS say that it MAY be in the cards for Hope. Her only hesitation was when she asked if Hope has any autistic features and if she looks at her hands (Roughly 50 percent of CdLS kids are on the autism spectrum and Hope definitely has some autistic features; she used to look at her hands quite a bit but seems to have outgrown it). That apparently sometimes works against speech. Anyhow, it was still really good to hear and gave us hope.
We also met with a psychologist for a consult to talk about Hope's endless energy and destructive tendencies at times. She said Hope is very curious -- she said this as Hope was making laps through a hotel closet, stopping only to study her cute little self in the mirrored doors -- and that's a really good thing. She also said her energy seems high but she's doing what a lot of babies do (pick things up and drop them); the only difference is Hope is almost five. So while it may seem destructive, it's likely normal for where she's at developmentally.
One cool session at the conference involved adults with CdLS, several of whom live independently and have full, busy, happy lives. Above are two pictures of Emily Turner from Mississippi; the bottom picture is from the first time we met her at the 2008 CdLS conference when she was 14 and the middle picture is from this year's conference. Emily is a shining star in the CdLS community. She recently graduated from high school and she's off to college in the fall in Mississippi. Go Emily! As the picture shows, Hope was clearly taken with her at the final banquet on Saturday.
Will Hope be as high-functioning as Emily? Probably not. But I left the conference feeling hopeful about Hope's future -- about finding a way to communicate with her; about her developing her own tastes, interests, and sense of self; and that hopefully one day she will have some independence, but in her own way.
Anyhow, all in all it was a great conference. Oscar tore up the rug at the banquet on Saturday night. He also adores a book we got there called "Melanie and Tommy have two pet rats and one syndrome," written by a boy whose sister has CdLS. They did a special presentation about their book and yes, the rats were there too. We met so many awesome families; my mom thoroughly enjoyed the grandparents session that was held; and we learned a lot. Until next time...
